When talking about loss and Lupus together, the tone immediately drops to a negative complaint. A stroking of the ego in the way of pandering. As many people with Lupus would know themselves and attest to, the desire to

complain about where my life is now, because of Lupus, is weak. I spend so much time fighting to retain the façade of normality. Why would I want to burst that illusion but vocalising my woes? And yet, as the year draws to a close, I feel that the only healthy recourse for myself is to name the losses and make known the sufferings I have been through. Only by talking about what loss my Lupus has caused will I be able to move forward into the new year.

The Loss of a Dream

At the start of this year I was on track to the final stage of my dream. The year of 2018 signified the end of my degree. This year I was going to finish the two final practicum placements of my teaching degree. The degree held so much meaning for me, as it was the one stable force, the pole in the middle of my merry-go-round, that was my life for the better half of the last decade. Day by day, in my mind I have slowly relived the minutes of the first part of my prac in the first week of February. I constantly walk myself through each and every mistake I made and the deterioration of my confidence in my work with children. I loved being around children. Ten days. Five years of my life unravelled in ten painful days. Ten days was all it took for the loss of my dream of working with children, teaching them as they grew. In ten days, my anchor and dream of being a teacher collapsed around me like the jaws of a a predator on prey. My world turned to black for a long time there. But I still had two units at university to complete.

The Loss of Stability

I am not going to say much about losing uni. This always happens when you finish your degree. But I will say that I had expected to graduate with a teaching degree, a Bachelor of Education. Instead I graduated one semester early with a Bachelor of Arts in Education Studies. I graduated with the knowledge and experience of a teacher, just not the ability to teach. There isn’t really a place for that in the world. I managed to pick up half a dozen volunteer positions with organisations that work in a parallel capacity to the education system. But jumping from one place to another, for 3-hour shifts, does not work well with my body. The stability and routine of my university life was a great comfort for me and the loss of that has ignited many fears about my ability to perform in new spaces.

Looking for Something More

Dating is hard, as a thirty-year-old. People aren’t partying, they are making solo steps to settling down, have settled already, or are finally making big steps in their attempts to build the career they have wanted. Mentally I realise I may as well be coming out of my teenage years, and IRL I have just graduated uni, which puts me on par with many people five years my junior. This year I learned that physically and for the sake of my health, I am not able to have kids. A hard blow for someone who is desperate to settle down and start a family. Living with my parents is just so wonderful. As housemates, they are good. As people, they are very supportive, but at the same time, they give me space. Now, I know what you are thinking, and yes, you are right. Thirty-year-old’s should not like living with their parents. But I am: recently graduated from uni, unemployed in any stable, long-term sense, single, and living in Perth WA (a big factor in real estate it seems) and considered unwell. I may have lost a lot of pride, but I am proud enough to know that these things should not be considered as negatives or evils in my life.

Physical Losses

In my body, there have been losses that I have not spoken about here. All I can say is that I am at a point in my life that I have started to wonder if Lupus really is an invisible illness, as they say? I have scars. Inside and out. There was a time in which people used to say I oozed confidence. That, when I walked into a room people would feel comforted or intimidated. That is not the person I wanted, or want, to be. But I feel, inside and out, that I have lost that confidence. Why would someone want to hire me, or date me? What do I bring? What can I offer? A strong, positive personality to sit at a desk and answer phones or enter data into a system. An infertile, addled, unemployed, unwell, thirty-year-old introvert living with her parents.

The Good Times

Don’t get me wrong, this year has been amazing. I turned thirty (you may have noticed). My parents moved into the house I live in. I graduated university with a good friend from my degree. Three of my friends got married, one of them a very close friend. My oldest and dearest bestest friend has made a big decision and step towards her future. Another one of my friends followed her dreams and took to studying abroad. And probably the most exciting ting this year, I have become a mentor. That is my name for it. I guess in the way of a ‘Big Sister’ Mentor. Another young person with SLE Lupus and Lupus Cerebritis reached out to me one day early on, asking for advice. It snowballed quickly from there and now, with the blessing (I hope) of her parents, we are working to build a strong, equitable and enjoyable life, such as I would have loved at her age and stage. Working with her has had a great impact on my life, and, I think has benefitted me as much as it has her. I have been blessed to meet and work with this girl, and I hope that her future with be bright.

In The End

The loss of my confidence has been hard. I have been floating in limbo this year, trying to find who I am, who I will be and how I fit in this world. I have made new friends and met some incredible people. My body has taken a sever toll, but there have also been baby steps of progress. Lupus is all about the baby steps. I guess the most important thing, in my life, at this point, is that my friends and family are still by my side. My heart still beats, I still breath air and my sight and hearing are going okay. I haven’t broken the law, there is no massive debt looming over me. Yes, this year has been full of loss, but it has been full of hope and potential new beginnings. In the new year I have at least 6 avenues leading to possibilities I can really get involved in for 2019.

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I found that every single successful person I’ve ever spoken to had a turning point and the turning point was where they made a clear, specific, unequivocal decision that they were not going to live like this anymore. Some people make that decision at 15 and some people make it at 50 and most never make it at all.
Brian Tracy